Saturday, May 8, 2010

Invisible and sometimes hiding

ME/CFS Awareness Day is this coming Wednesday. To gear up, I'm writing a press release about the Phoenix Rising video, which features photos of people with the disease along with our song "Everybody Knows About Me." I'm soliciting quotes from people who have the disease about the video/song.

When I mentioned the quotes to somebody who has ME/CFS, she said I may not get much participation. She knew that many people didn't submit their pictures because they didn't want themselves on YouTube for an ME/CFS video. The disease is so often disparaged, a lot of patients don't even want to admit to having it.

That's not exactly news to anyone who's even passingly familiar with ME/CFS, but it's still depressing. If nothing else, I hope the video encourages other sufferers to come out.